Women and Girls on the autism spectrum, Autism Awareness Week with the National Autistic Society

To mark Autism Awareness Week, we are thrilled to welcome guest blogger, Carol Povey, Director of the Centre for Autism at the National Autistic Society. Last year Pears Foundation funded an online Women and Girls training module to support professionals to better understand autistic female characteristics. Here Carol explores the impact of autism presenting differently for Women and Girls.

In the past it was thought that women and girls were less likely to be autistic. However, recent research, clinical practice and anecdotal evidence suggests that many autistic females present less traditionally obvious traits of autism. This can result in misdiagnosis, late diagnosis, or women and girls not being diagnosed at all which can lead to additional mental health difficulties and poor outcomes in life. As a result, improving the understanding of autism in women and girls is hugely important to us, at the National Autistic Society.

In January 2018, we launched our Women and Girls online module which was generously funded by the Pears Foundation. The module aims to support diagnosticians to better understand the different ways autism can manifest in women and girls and therefore enhance confidence to diagnose people successfully.

The module was project managed by our Online Module Development Manager, Rachel Townson who is on the autism spectrum and it was co-produced with autistic girls and women who informed the whole project. In particular, we worked with the NAHT Women and Girls forum which has recently published “Girls and Autism – Educational, Family and Personal Perspectives.” This full involvement of autistic girls and women from conception to finished product ensured that the training reflected the first hand experiences of autistic girls and women. The module has now been accessed by almost 19,000 people in the past year and the response has been incredibly positive.

The module takes approximately 120 minutes to complete and has a range of interactive features, including exercises and scenario based learning, reflective activities, short film clips and questions to ask.

It’s important to point out that every person on the autism spectrum is different. But, as a rule, women and girls are often better at developing ways to mask (often unconsciously) what we traditionally think of as the signs of autism, which can make it harder to diagnose. It has been a major barrier to clinicians and other professionals recognising autism and understanding the experiences of autistic women and girls.

Whilst it can be useful to be able to adapt to some situations, this ‘masking’ can also lead to a great deal of stress, and many women and girls go on to develop secondary problems such as anxiety, eating disorders or depression. Many girls are able to mask whilst at school, but when at home the stress of having to hold everything together all day may take its toll. It is not helped if educators then doubt parents when they try to discuss the impact school is having on their daughters mental health.

Autistic girls’ special interests may also differ from boys. As opposed to the traditional boys’ interests of trains, physics or dinosaurs, girls may show a passion for animals, characters from soap operas or pop music. It is not the area of interest which may point towards an autism diagnosis, but the quality, focus and zealous nature of that interest. Too often, girls’ interests are brushed away with the phrase that all girls of that age are interested in pop stars, fashion or animals.

This lack of understanding of the different way autistic females can present can lead to women going through life feeling that they don’t fit in, and that they are somehow failing in everything they try to do. Sadly, many women and girls describe a life filled with bullying, trying to fit other’s expectations of them, and poor self-esteem. A timely assessment undertaken by a clinician who has knowledge and expertise in working with autistic women and girls helps women to understand some of the experiences they have been through in their lives, and enables them to help others to put in place simple adaptations which help them to thrive in school, work, and relationships.

Gender should never be a barrier to a diagnosis and getting the right support. We hope this module will help to make this a reality and encourage diagnosticians, people who are seeking a diagnosis or are recently diagnosed to use it. We need more research into the ways autism can manifest among different groups of people, and more openly autistic women with a public profile.

Online Module Development Manager, Rachel Townson also provides her reflections on developing this module:

“With this being a topic very close to my heart I found it exhilarating yet exhausting to create this vital module. Myself and my colleague Lorraine MacAlister worked hard to include as much content that we could although we knew we could never cover it all, that was certainly a challenge when deciding what to put in the course. It was essential for a module, primarily focused at diagnosis of autism in women and girls, to focus on various commonalities that may be seen in girls or women on the spectrum throughout their lifetime, so we looked at a life trajectory profile. To gather this information we hosted focus groups with autistic women, filmed autistic women and girls, attended conferences to hear personal narratives, read personal narrative books and blogs, and spoke to some leading professionals in the field such as Dr Judith Gould, Sarah Hendrickx and Dr Wenn Lawson. It was imperative to use this method of gathering information for the module to be successful in capturing a wide range of perspectives from the autistic community. Our module has been so successful and without the amazing support of our funder Pears Foundation, we would not now be in the position to announce that we have had almost 19,000 people access the content. The impact of this module could be life changing for so many women and girls across the nation.

Future learning is needed to explore further aspects of female life on the autism spectrum, including child bearing, motherhood, menopause and hormonal changes in the teenage years. The learning journey is never complete but funding, such as the funding provided by Pears, is literally life changing for so many individuals that benefit from the learning, and those who benefit from professionals who are more up-skilled in identifying and supporting their needs.”